While many families are enjoying a relatively easy ride in the stream of Daybue, other families are struggling to keep up with them as they stumble over obstacles, face flash floods of poop, and encounter distressing factors like weight loss or loss of appetite on the rocky trail.
Every family and team (family, doctors, and Acadia) is working out their own solutions, but there’s not much of a playbook here, and it’s being written, or at least notes are being taken for when that playbook is ready to be written.
We need real, concrete steps and bridges to get us over these obstacles. Not all families have been able to find a solution in time before weight loss became the overriding factor. Not all children or adults have ounces to spare. Katelin is fortunate that she does; otherwise, the 11 lbs she’s lost in the last six weeks would be a deal breaker. She’s had most of the common side effects: diarrhea, vomiting, loss of appetite, and weight loss. It’s been a difficult, challenging, but relieving time as each is getting conquered (so far). One of the most challenging aspects has been no clear guidelines for the diarrhea. There has been a consensus put out, vague guidelines that basically said we recommend trying this… but how much, how often, how long?
That uncertainty has now been addressed! Recommendations for the management of diarrhea with the use of trofinetide in Rett syndrome. There is also a “plain language” format of the article. The authors are highly respected specialists in their fields:Kathleen J Motil, Arthur Beisang, Timothy A Benke, Brian Gaucher, Victor Abler & Dominique Pichard
I highly recommend every parent/caregiver with a loved one suffering from side effects to read this/these articles. I have felt empowered by this document to step back and rethink my approach to Katelin’s issues surrounding side effects. While I won’t comment as to whether I’ve found “THE” solution, right now I have found “A” solution that appears to be working for the diarrhea. With fewer side effects, some of her appetite has returned. Her breakfast eating is a sore point, but lunch is usually a far less anxiety-driven experience for ME! as she eats most of it and is very happy during the meal. Part of me thinks she just might be hoping I’ll cave with a meal out for supper, though, little leprechaun!
I don’t make light of it on purpose. I need to keep my spirits up during this time of challenges, and this paper has helped me in the last few days. I can feel the stress decreasing. It was a fight against an unknown foe, for sure. I spent hundreds of dollars on rash creams, burn gels, extra diapers, chucks pads, and laundry. I spent hours on the internet scouring pages for how to stop it.
Now that she hasn’t had any major side effects for the last few days, I can take a breath. I can cut back on all that I am trying and stick to a plan, catching it quickly if it’s not enough. After about two weeks off the Daybue, except for an occasional dose to stave off regression, I am up to 8 ml per dose with no major side effects. This is so encouraging to me. What’s even more encouraging is that despite the pain she has gone through and the letdown of regressing a bit, as well as the sobbing when looking at her food, she STILL gains words and abilities.
She was watching the Monsters Inc. intro, which is a jazzy number, and the characters were dancing to the rhythm, and she said, “dancing.” On Tuesday, my big brave, smart girl followed complex directions at the doctor’s office – “Katelin, hop out of the chair and go stand on the scale.” And she did just that. The nurse and I just looked at each other with our mouths open! Usually, she’s so scared to do this that we have to corral her in, and it takes several attempts. But this time, it was different. One and done. Then she needed her blood drawn – I said, “Katelin, put your right hand down and don’t reach for the needle, she’s going to draw blood.” Usually, it takes three people, but she followed my instructions to a T! The phlebotomist and I were stunned. This was a big one for me since I was a phlebotomist, and I know how difficult this aspect has been for her over the years. I just started to cry, and Katelin looked at me like I was a tad crazy.
On Wednesday, it was her first day back to the program after two and a half weeks of healing. She came home on the bus. Me: Katelin, come on, let’s get off the bus. Katelin: “Not yet!” and she laughed and laughed. The bus driver tells me she’s begun to help him buckle her in by holding up one side of the seatbelt. The coup de grâce of this whole time has been her behavior, which continues to stay steady despite all the pain and setbacks. She believes me when I tell her, “I will find a way.”
